Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 I am looking for a live in chef with good recipes. I have an extra room Ellen(pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 I am looking for a live in chef with good recipes. I have an extra room ROFL Ellen!!!!!! Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 Hey, I have an extra room, too. Any takers? Sharon in KY Beauby1022050943@... wrote: I am looking for a live in chef with good recipes. I have an extra room Ellen(pam ---------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 In a message dated 3/26/02 2:04:40 PM Pacific Standard Time, judyo_93@... writes: << , do they really think these could be related? Seems strange. Love, Judy - >> Judy, I have no idea, just never knew that enodmetriosis was considered an autoimmune disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 --- Judith Ostry wrote: > Squeek, emotional rollercoaster? Welcome to the > world of Prednisone! Besides making you hungry > enough to eat a horse, it also takes your emotions > for a ride, Kind of like having PMS every day! > Every time I am back on it, my one goal is to get > off it! I hate that sometimes it is the only thing > that works, and I worry about what else it is doing > to my body that won't show up for a while yet. > Prednison is indeed the " wonder " drug, we all wonder > why we're on it! Hang in there, it WILL get better! > Love, Judy > The wonderful world of prednisone...the wonderful world of RP.......Calgon, take me away! I guess we all worry about what prednisone is doing to our bodies, but I don't think we have a choice. My stupid ear has been calmed down all day, and right now it is trying to start something up again. Thanks for the reassurance that it will get better. Let me knock on your wood before you eat it! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 --- Judith Ostry wrote: > Squeek, this is the most frustrating disease, isn't > it? I too keep dancing with pred. Each time I get > off it, something else happens, and I'm right back > dancing again. When I first went on pred, the group > used to tell me it was a wonder drug, we all wonder > why we are on it! Hang in there and I hope you feel > better. Love, Judy Thanks again, Judy. You've actually been all the way off pred? For how long? Are you back on it now? I think my biggest problem with it, besides the high bp it has caused is just the fact that I can't get off! It is frustrating, especially when it seems to me that I am on enough other meds to choke a horse! But, I am learning not to mess around and wait for a flare to subside on its own. That just doesn't happen. Hope you are having a great evening. Love, squeek __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 --- Judith Ostry wrote: > Sharon/Squeek, I'm on 20 mgs of metho each week, > plus 10 mgs of Leucovoran to undo the side effects > of the metho, I had more noticeable effects from the > major flare from the Pred (started at 60 mgs), but > as the pred came down, the metho took over. It took > a while, but I have not (knock on wood) had a flare > for over a year, and my pred is down to 10 mgs. I > still have some side effects from the metho, namely > nausea and migraines on chemo day), and fatigue is > just part of life, I guess. Other than that, I > really am fine and have no complaints. Of course, > if my ears start acting up again, the complaints > will fly, boy, that hurts! But so far so good. One > question I have though, my rheumy will not let me go > above 20 mgs of metho, and I read that someone was > on 25 mgs. I'm confused, is it safe to go above 20? > Love, Judy > Well, I should have read all my messages before I responded. As to raising the MTX, I don't know about that. The highest I ever got was 20 mg., and ended up getting toxic on that dose. I don't remember, but is this one that is based on your weight? Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Squeek, I'm particularly fond on cherry! Love, Judy Re: Judy --- Judith Ostry wrote:> Squeek, emotional rollercoaster? Welcome to the> world of Prednisone! Besides making you hungry> enough to eat a horse, it also takes your emotions> for a ride, Kind of like having PMS every day!> Every time I am back on it, my one goal is to get> off it! I hate that sometimes it is the only thing> that works, and I worry about what else it is doing> to my body that won't show up for a while yet.> Prednison is indeed the "wonder" drug, we all wonder> why we're on it! Hang in there, it WILL get better!> Love, Judy>The wonderful world of prednisone...the wonderfulworld of RP.......Calgon, take me away! I guess weall worry about what prednisone is doing to ourbodies, but I don't think we have a choice. My stupidear has been calmed down all day, and right now it istrying to start something up again. Thanks for thereassurance that it will get better. Let me knock onyour wood before you eat it! Love, squeek=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Squeek, yes I have actually been off pred a few times. Right now I am down to 10 mgs (from 30 this time). If I am on a high dose (30+) I come off 5 mgs at a time until I get down to 10, then I go down 2.5 mgs at a time until, voila, I am off! My problem is that since the pred stays in your system for six months, I always end up back on it before the six months are done! Rheumy is talking about a maintenance dose, but I am fighting the idea. I have really flukey things that happen to me that send me back to the pred. I am already deaf in my right ear (from childhood illnesses) on Christmas Eve I woke up completely deaf in my good ear! Hubby called my ENT (who not having my file in front of him) said he didn't want to prescribe pred without seeing me - like he would go to te office on Christmas Eve! Since this has happened before, and I know better, I put myself on 30 mgs of pred right away. By Christmas day, I could hear things thru water, does that make sense? It sounded like I had water in my ear that I couldn't get out. By the day after, I could tell it was slowly coming back when I saw the ENT, who (of course) said the pred was the right thing to do (duh). It took about 5 days to come back to normal. But my "normal" now has lost a bit more of both the high and low tones. BUT I can hear! This is the second time this has happened, which makes me nervous. The ENT said the RP is probably the culprit, since, as we know, it can hit any and everywhere it wants to. The rheumy wasn't so sure, but as I said, he may put me on a maintenance dose as a "just in case". Saw my Optho and he wasn't surprised the RP hit my hearing as there is cartiledge in our ears and the pressure from the RP could do it. So now everyone (especially me) is worried about my losing my hearing again. I don't know if a low dose of pred is the solution, since, who knows what the pred is doing? Well, this is certainly a long answer to a rhetorical question, isn't it? God knows, I wish I had answers about this miserable disease, but I don't. Sometimes I don't even have the right questions! I think it would be extremely helpful if we all had the same symptoms, it would probably make it easier to find the cause and cure us! So while we all pray for a cure, hang in there! Love, Judy Re: Judy --- Judith Ostry wrote:> Squeek, this is the most frustrating disease, isn't> it? I too keep dancing with pred. Each time I get> off it, something else happens, and I'm right back> dancing again. When I first went on pred, the group> used to tell me it was a wonder drug, we all wonder> why we are on it! Hang in there and I hope you feel> better. Love, JudyThanks again, Judy. You've actually been all the wayoff pred? For how long? Are you back on it now? Ithink my biggest problem with it, besides the high bpit has caused is just the fact that I can't get off!It is frustrating, especially when it seems to me thatI am on enough other meds to choke a horse! But, I amlearning not to mess around and wait for a flare tosubside on its own. That just doesn't happen.Hope you are having a great evening. Love, squeek__________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Well, it it's based on my weight, the sky's the limit! Judy Re: Judy --- Judith Ostry wrote:> Sharon/Squeek, I'm on 20 mgs of metho each week,> plus 10 mgs of Leucovoran to undo the side effects> of the metho, I had more noticeable effects from the> major flare from the Pred (started at 60 mgs), but> as the pred came down, the metho took over. It took> a while, but I have not (knock on wood) had a flare> for over a year, and my pred is down to 10 mgs. I> still have some side effects from the metho, namely> nausea and migraines on chemo day), and fatigue is> just part of life, I guess. Other than that, I> really am fine and have no complaints. Of course,> if my ears start acting up again, the complaints> will fly, boy, that hurts! But so far so good. One> question I have though, my rheumy will not let me go> above 20 mgs of metho, and I read that someone was> on 25 mgs. I'm confused, is it safe to go above 20?> Love, Judy>Well, I should have read all my messages before Iresponded. As to raising the MTX, I don't know aboutthat. The highest I ever got was 20 mg., and ended upgetting toxic on that dose. I don't remember, but isthis one that is based on your weight? Love, squeek=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 --- Judith Ostry wrote: > Well, it it's based on my weight, the sky's the > limit! Judy Hey Judy, just reading one of Dr. Hermans reports this morning (Treatment of Relapsing Polychondritis), and in it he said " Methotrexate should be initiated in refractory cases at a dose of 5 to 7.5 mg per week, increasing by 2.5 mg increments every four to six weeks until the desired clinical response is achieved or a level of 25 mg per week is reached. " Hope this helps. Love, squeek > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE > ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE > FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. > REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My rheumy says 20 mgs is the limit, I wonder why? I'll ask. Thanks! Judy Re: Judy --- Judith Ostry wrote:> Well, it it's based on my weight, the sky's the> limit! JudyHey Judy, just reading one of Dr. Hermans reports thismorning (Treatment of Relapsing Polychondritis), andin it he said "Methotrexate should be initiated inrefractory cases at a dose of 5 to 7.5 mg per week,increasing by 2.5 mg increments every four to sixweeks until the desired clinical response is achievedor a level of 25 mg per week is reached." Hope thishelps. Love, squeek>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE> DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 --- Judith Ostry wrote: > Squeek, yes I have actually been off pred a few > times. Right now I am down to 10 mgs (from 30 this > time). If I am on a high dose (30+) I come off 5 > mgs at a time until I get down to 10, then I go down > 2.5 mgs at a time until, voila, I am off! My > problem is that since the pred stays in your system > for six months, I always end up back on it before > the six months are done! Rheumy is talking about a > maintenance dose, but I am fighting the idea. I > have really flukey things that happen to me that > send me back to the pred. I am already deaf in my > right ear (from childhood illnesses) on Christmas > Eve I woke up completely deaf in my good ear! Hubby > called my ENT (who not having my file in front of > him) said he didn't want to prescribe pred without > seeing me - like he would go to te office on > Christmas Eve! Since this has happened before, and > I know better, I put myself on 30 mgs of pred right > away. By Christmas day, I could hear things thru > water, does that make sense? It sounded like I had > water in my ear that I couldn't get out. By the day > after, I could tell it was slowly coming back when I > saw the ENT, who (of course) said the pred was the > right thing to do (duh). It took about 5 days to > come back to normal. But my " normal " now has lost a > bit more of both the high and low tones. BUT I can > hear! This is the second time this has happened, > which makes me nervous. The ENT said the RP is > probably the culprit, since, as we know, it can hit > any and everywhere it wants to. The rheumy wasn't > so sure, but as I said, he may put me on a > maintenance dose as a " just in case " . Saw my Optho > and he wasn't surprised the RP hit my hearing as > there is cartiledge in our ears and the pressure > from the RP could do it. So now everyone > (especially me) is worried about my losing my > hearing again. I don't know if a low dose of pred > is the solution, since, who knows what the pred is > doing? > > Well, this is certainly a long answer to a > rhetorical question, isn't it? God knows, I wish I > had answers about this miserable disease, but I > don't. Sometimes I don't even have the right > questions! I think it would be extremely helpful if > we all had the same symptoms, it would probably make > it easier to find the cause and cure us! So while > we all pray for a cure, hang in there! Love, Judy > Judy, thanks for sharing part of your story. I find it so interesting to learn what others in the group have been through. My rheumy has also mentioned me being on a maintenance dose, but he really does want to try getting me off. I'm all for that, but boy does it get discouraging! As you well know. Yes, we all need the same symptoms, and the same response to med's. It would make this ever so much easier! On second thought, I think I'll stick with my own symptoms. They don't seem too bad when I read about some of the others. Take care, and try a little walnut (when you are finished with the cherry woodwork). Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 I guess it goes with the old Indian saying: Walk a mile in my moccasins. Sometimes when I read what the others are saying, I thank God that I am not in that bad a shape. Of course, they may be saying that about the shape that I am in! Who knows? I'll settle for my moccasins. Love, Judy Re: Judy --- Judith Ostry wrote:> Squeek, yes I have actually been off pred a few> times. Right now I am down to 10 mgs (from 30 this> time). If I am on a high dose (30+) I come off 5> mgs at a time until I get down to 10, then I go down> 2.5 mgs at a time until, voila, I am off! My> problem is that since the pred stays in your system> for six months, I always end up back on it before> the six months are done! Rheumy is talking about a> maintenance dose, but I am fighting the idea. I> have really flukey things that happen to me that> send me back to the pred. I am already deaf in my> right ear (from childhood illnesses) on Christmas> Eve I woke up completely deaf in my good ear! Hubby> called my ENT (who not having my file in front of> him) said he didn't want to prescribe pred without> seeing me - like he would go to te office on> Christmas Eve! Since this has happened before, and> I know better, I put myself on 30 mgs of pred right> away. By Christmas day, I could hear things thru> water, does that make sense? It sounded like I had> water in my ear that I couldn't get out. By the day> after, I could tell it was slowly coming back when I> saw the ENT, who (of course) said the pred was the> right thing to do (duh). It took about 5 days to> come back to normal. But my "normal" now has lost a> bit more of both the high and low tones. BUT I can> hear! This is the second time this has happened,> which makes me nervous. The ENT said the RP is> probably the culprit, since, as we know, it can hit> any and everywhere it wants to. The rheumy wasn't> so sure, but as I said, he may put me on a> maintenance dose as a "just in case". Saw my Optho> and he wasn't surprised the RP hit my hearing as> there is cartiledge in our ears and the pressure> from the RP could do it. So now everyone> (especially me) is worried about my losing my> hearing again. I don't know if a low dose of pred> is the solution, since, who knows what the pred is> doing?>> Well, this is certainly a long answer to a> rhetorical question, isn't it? God knows, I wish I> had answers about this miserable disease, but I> don't. Sometimes I don't even have the right> questions! I think it would be extremely helpful if> we all had the same symptoms, it would probably make> it easier to find the cause and cure us! So while> we all pray for a cure, hang in there! Love, Judy>Judy, thanks for sharing part of your story. I findit so interesting to learn what others in the grouphave been through. My rheumy has also mentioned mebeing on a maintenance dose, but he really does wantto try getting me off. I'm all for that, but boy doesit get discouraging! As you well know.Yes, we all need the same symptoms, and the sameresponse to med's. It would make this ever so mucheasier! On second thought, I think I'll stick with myown symptoms. They don't seem too bad when I readabout some of the others.Take care, and try a little walnut (when you arefinished with the cherry woodwork). Love, squeek=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Hi There, Thanks for the tip about taking the metho. My doctor told me to take it at night and even though I eat before I take the pills I still get nausea. Not till about noon the next day though. Hope you are doing OK. Love, Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 --- Judith Ostry wrote: > nice little print out would work wonders for the > terminally confused! Help! Love, Judy Terminally confused...I love it. squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Marilyn, usually I am able to sleep thru the nausea at night, my problem is after the morning dose, but today I again mad sure I had a full breakfast before I took it, and I am fine! Finally, something works the way it is supposed to! Love, Judy Judy Hi There,Thanks for the tip about taking the metho. My doctor told me totake it at night and even though I eat before I take the pills Istill get nausea. Not till about noon the next day though.Hope you are doing OK. Love, Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 --- Judith Ostry wrote: > Squeek, great idea! I'm ashamed to admit I haven't > done mine yet, lots of excuses, but I WILL get to > it, I promise. I'm glad we have someone so creative > in the group. Love, Judy > Creative???? Oh, you don't know me very well! I only wish I were creative. Nah! I'm just not afraid to ask people to donate....especially those people I will never see. I wrote to the mayor of our city, the lead news anchors on our local TV channels, a columnist in our newspaper, the President, Sally, and Ananda along with friends and family. Still need to get one off to our governor. Maybe I'll hit up my doctors also. Good luck on yours. Maybe you can go for the Chicago connection...Oprah! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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